Sinn Féin - On Your Side

Muscular Dystrophy briefing an opportunity to place sufferers’ needs at centre of Translarna issue – Conway-Walsh

Sinn Féin Senator Rose Conway-Walsh is facilitating a cross
party briefing on the availability of the Translarna drug to
sufferers of muscular dystrophy in the State.

The briefing will take place on Tuesday 3 October at 4pm in
the AV Room of Leinster House. Leading experts, as well as families of
sufferers, will address the briefing as part of their campaign to secure HSE
funded access to the drug.

Speaking ahead of the briefing, the Mayo senator said:

“Tomorrow’s briefing is primarily an opportunity for
politicians from all parties to hear first-hand the experience of sufferers and
their families during their campaign to obtain access to Translarna. I am
also hopeful that some new avenues can be explored in order to achieve this. In
August, Gerry Adams TD and Michelle O’Neill MLA met with the family of Lewis
Harte-Walsh who suffers from muscular dystrophy and heard first-hand how time
is of the essence in the approval of Translarna.

“Translarna has proved life-changing to sufferers and
can extend the period in which they have full use of their legs. It is unfair
to sufferers and their families, all of whom are fully aware of the potential
benefits of the drug, to deny them access to a fully funded course of
treatment. This unfairness is compounded by the fact that access to the drug is
available in other parts.

“We have a situation where access to Translarna is
fully funded in one part of the island and not in the other. This presents
parents with a stressful decision as to whether to move to another jurisdiction
in order to access the drug. This is why an all-island approach to drug
treatment and negotiation, along with our EU partners is essential. Translarna is
available in 22 other EU countries.

“My party colleague Louise O’Reilly TD revealed at the
weekend how over €3 million has been spent thus far by the OPW renting an
office block that is lying idle, yet families such as those in attendance at
tomorrow’s briefing are told that the money simply isn’t there.

“The cost of medicines and the conduct of large
pharmaceutical companies has also become a serious cause for concern recently.
Therefore, it is of the utmost importance that patient considerations are put
front and centre by pharmaceutical companies when it comes to pricing drugs.

“I encourage as many of my Oireachtas colleagues
as possible to attend the briefing and hope that this will start the process of
a more patient centred, all-island approach to securing drug treatment funding.”